When Paul Raeburn needed immediate help for his suicidal son, he had few good options. The teen had threatened to sit on nearby railroad tracks until a train came. Even though Raeburn, a leading health and science writer, was in a position to know more about the best available mental health services and treatment options for his son than most, when a crisis hit, he felt he only had one choice: to call the police and risk that his child would wind up incarcerated rather than hospitalized.
“I tried to physically restrain him, but that’s not easy with a teenager,” Raeburn says, “I had no other option and this doesn’t seem like an ideal situation to take care of our sick kids.”
While it’s not clear whether mental illness— alone or in combination with a developmental disorder—played any role in the devastating tragedy in Newtown, CT, the shootings have triggered a much-needed discussion about how we care for psychiatric patients. The debate has thrown a harsh light on the piecemeal nature of America’s mental health system, which is leaving too many children and young adults, like Raeburn’s son, without the resources they need.
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Experts agree that “system” isn’t even an appropriate descriptor for the state of services designed to treat mental illness: there is little coordination of care and various agencies in health, education, mental health, addiction, disability, child welfare and law enforcement, often work at cross-purposes. For example, a child’s school may recommend residential treatment while her psychiatrist supports in-home services; the juvenile justice system may mandate one type of placement while the parents and education team believe another is more appropriate. Behavior management techniques or medications that have been known to fail with a child may be used on him by professionals in a new setting or agency unfamiliar with the child’s history.
Families with out-of-control, suicidal or aggressive children have no central place to turn to for help, and no coordinated action plan for learning about and accessing services that could provide desperately needed support. And those who can provide help are in short supply; a recent government report showed that 7500 psychiatrists currently serve the needs of children and adolescents, while around 20,000 are needed. Reimbursement for mental health services, from both public and privates insurers, frequently falls short of providing the most-needed services, which typically involve continuous care that can extend for years.4
About five million American children suffer mental illnesses — including schizophrenia, bipolar disorder, major depression and other conditions — that are severe enough to cause significant life impairment such as being unable to live safely at home or attend and benefit from school. Nearly twice as many experience some type of developmental disorder, the category that includes autism and intellectual disability, and there is considerable overlap between the two categories; about half of the developmentally disabled also have at least some diagnosable mental illness. That distinction isn’t merely clinical. Since services for mental health issues are often offered based on the diagnosis, how doctors or other health officials label children’s disorders, and how they prioritize those that occur in concert, can have an indelible impact on whether that child finds the appropriate treatment in the health, education, child welfare, or legal systems.
Funding is also dramatically declining: states have lost some $4 billion in mental health funding over the past three years, the largest cuts since the de-institutionalization movement of the 1970s. And those cuts could get deeper. At least 10% of federal spending on mental health care is slated to be cut if Congress and the President don’t agree on a new budget before January, with advocates [PDF] estimating that at least 1,300 severely emotionally disturbed children will lose access to care entirely. Some 320,000 will no longer receive early intervention and other services that can minimize the most severe symptoms of some cases of mental illness, which can require more expensive and lengthy in-patient care. Medicaid, which accounts for 50% of public mental health spending, may also be targeted, leaving thousands more without services.
Increasingly, the disjointed system is forcing well-intentioned parents like Raeburn to take more drastic measures, calling in law enforcement or even relinquishing custody of their children to the state in order to get the help they need. In 2001, the last year in which such custody transfers were measured [PDF], the parents of at least 12,000 children had taken this drastic step, though measures to address the problem may have lessened that number somewhat. Even so, the adult and juvenile correctional system has become America’s largest provider of mental health care, treating more people than hospitals or residential centers.
“It’s a disaster,” says Dr. Bruce Perry, who helped lead the mental health response after the Columbine shooting in 1999. Perry frequently receives calls people across the socioeconomic spectrum—including the extremely wealthy— who cannot find appropriate, local help for their children. [Disclosure: Dr. Perry and I have written two books together]
“Even if do you have insurance, it’s very difficult to find the services and doctors and providers that you need,” says Raeburn, the author of Acquainted with the Night: A Father’s Quest to Understand Depression and Bipolar Disorder in His Children, who has two children who struggled with serious mental illness.
Darcy Gruttadaro, director of the Child and Adolescent Action Center at the National Alliance on Mental Illness (NAMI), notes that the severe child psychiatrist shortage means that most families who aren’t having an immediate mental health emergency have to wait three to six months to get an appointment and often have to travel far from home to get an assessment from the only doctors with specialized training in treating mental illness and emotional disturbance in youth.
And even after the best assessment is done, obtaining appropriate treatment is a challenge. Though psychiatric drugs are essential and life-saving in some cases, many are not adequately studied in children, and potential side effects and long lasting complications aren’t always known.
The hurdles are even greater for non-drug therapies. Unlike for medications, there is no agency such as the Food and Drug Administration that sets minimum standards for safety and efficacy of talk and behavioral treatments, which makes evaluating different approaches for their ability to improve a specific condition more challenging.
“I think it’s important for families to be well educated about what their options are and to ask a whole lot of questions,” says Gruttadoro. (NAMI offers a family guide [PDF] to finding evidence-based treatment.) Part of that research involves sorting through which agencies may provide the services a child may need. Some mental health services, including aids to support academic success, for example, are provided through schools under the Individuals with Disabilities Education Act (IDEA), a 2004 law that provides special education and other mental health services through the Department of Education.
Others come through the mental health or juvenile justice systems, and these groups rarely coordinate their programs, much less alert parents to more appropriate options at other agencies. “When it comes to children’s mental health, many of the services that are most effective fall outside of the medical model,” Gruttadoro says.
Putting aside the gaps and lack of coordination in mental health services, parents of teens and young adults with more serious mental health issues that require intensive care face the additional challenge of finding alternative options when their children are no longer eligible for involuntary youth treatments. For those young adults who may be a threat to themselves or others, states vary in their policies on what happens when they are no longer considered minors and their parents therefore cannot force them to get help.
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Developing a more coordinated policy for such cases, however, may become critical in coming years, since there is evidence that high-quality court-mandated care in the community for people with schizophrenia or others who are at risk of violence has been shown to dramatically reduce both re-hospitalization and crime.
And private insurance coverage for mental health services is improving, albeit slowly. The lifetime caps on mental health services enforced by many insurers before 2010 have been brought to similar levels to that of other diseases by many companies, thanks to the mental health parity law, but coverage of mental health services is not currently mandated.
That will change in 2014, when mental health coverage will be mandatory as part of the essential benefits package. Insurers will also be prohibited from denying coverage due to pre-existing mental health conditions. With the budget for Medicaid, the source of half of all payments for public mental health care, still threatened, however, the gaps in mental health services are still significant, and may still grow.
“This issue really needs to see the light of day,” says Gruttadoro, “Once it does people get outraged and the squeaky wheel gets the oil.”